some random musings

Just over  a year ago I wrote a post about how much I hated being pregnant, but how I loved how my body bounced back and how much breastfeeding helped with the weight loss. I had found that after each of my children I had dropped a dress size without really doing much different, except running around after more and more children. I even speculated as to how many I would have to have to be down to a size 10.

How times change. I am now that fabled size 8-10 and have been since October. I hate it. I still look in the mirror and hate what I see. I look ill and drawn. I look tired and no amount of amazing make up or BB cream is going to improve that, especially when my body has me up and down several times a night and regularly waking in pain at 5.30am as all my medication starts to wear off.
Add in the 3 children under 6, who wake in the night because they are ill or who don’t go to sleep because they have had a nap during the day at the wrong time and I am permanently exhausted. 

Of course, I don’t show it all. I try and put a confident, friendly brave face on it but inside I am falling apart. 

The palliative care I am receiving is excellent, but while sometimes the pain relief is adequate sometimes it just isn’t enough. I see the consultants and have to be honest that sometimes I feel the pain relief is adequate and sometimes i am swearing and squirming in pain. If you took one look at me you probably wouldn’t guess it though.

At the moment though, as the weather warms up I am waiting for someone to congratulate me. 

Why? You might ask. Well I told you that my tumour hadn’t responded to treatment and hadn’t shrunk. The truth is, its not just bloating, but I look as though i am 5 months pregnant at the moment and I can only imagine that it is going to get bigger and bigger. 

Now that I have had time to come to terms with the fact that my tumour is growing I have been thinking about what the options are. I wonder whether surgery to remove part of the tumour might now be an option as it makes my stomach so tender and uncomfortable. 

I struggle with lifting my children and cuddling them. rolling over in bed can be painful and no matter how many wheat bags or heat packs I use, how many paracetamol I take I cannot seem to manage the pain. What i need is liquid paracetamol which works incredibly fast and well. but no one seems to believe me, when I have been in hospital i have had to fight for the liquid stuff as it works so much better for me than capsules or tablets. 

Anyway back to the matter at hand. I am slowly coming to terms with what has happened over the last week. But make no mistake I am still coming to terms with this momentous moment. So, i’m sorry if having a coffee or lunch is not a priority for me right now. I need to focus on my health and managing expectations over the next few months. 

Silent Sunday

Silent Sunday

One Outfit, Three Children, 5 1/2 years!!!

Pre chemo

Just over a year ago I posted about how much I loved knitting things for children. Since completing hope's blanket I have realised his true this is.

Children's projects are portable and quick to knit up.

Since finishing Hope's blanket which consisted of over 20,000 knit & purl stitches (no I haven't counted, but 125 stitches multiplied by 160 rows...) I have completed a scarf for Imogen, a Christmas present for someone and am in the middle of a Scandinavian inspired hat and sock set for Hope for Christmas. 

Then there are the Father Christmas socks for my big two and a new hat and scarf for Isaac. I really feel like my knitting mojo has returned. This may be because I can't bear to think of all the money I have spent on wool over the past 8 years going down the drain if Tony decided to just bin it.

So keep your eyes peeled for more project pictures coming when I can prise the scarf from Imogen's neck.

Paranoid Android

Wow, this weeks feels like it has been so busy.


Monday I had a follow up with my consultant at East Surrey. I know the NHS is free, but I waited almost 75 minutes after my appointment time to go in. Luckily I didn't have the children with me, otherwise I think we would have gone stir crazy. 
I have to admit something now. Since November when I went back into hospital with the adhesion/blockage, I have been paranoid about what is going on inside me. And not just me, with the children as well. Someone on a well known parenting forum linked to this and I have been over analysing everything since. Particularly with them, I am so worried about them and especially the likelihood of them getting cancer in the future and it all being down to me and my crappy, faulty genes. It was good to see my surgeon and hear yet again how well I was looking and talk to him about the over analysis I am doing and the paranoia I feel about everytime something is a little different I worry about having to come back into hospital again. I never used to worry about going into hospital but having been in so often and having to go for chemotherapy has really made me, not scared about being readmitted, but annoyed more than anything that this cancer has taken over once again and I am not in control. 
He was very reassuring, and helped me realise that things are probably not going to be normal for a while and it is usual to be overanxious, especially given the fact that I had been readmitted. 
It has also forced me to reassess some of the things I do and more specifically my sedentary lifestyle. 
This Blog is written by a friend of mine, who I really admire for putting this on the internet and chronicling everything. It has inspired me to unearth the Wii Fit board and associated game and also start back with my yoga practice. Its also made me look at my diet and I realise that I need to set a better example to the children. After all how can I expect them to eat things that I don't. So I have started feeding them, and hence me, more fruit and veg. 
I have realised that I do actually enjoy the taste of fresh, seasonal produce and can make a real difference to my health if I continue with this. 
In other news, I am due to have chemotherapy number 7 on Wednesday, which means that after the obligatory 2 weeks of tablets I will have one left. That last one falls 2 days after Imogens 2nd Birthday. 


I can't quite believe how far I have come. When I think back to October and having my birthday, PICC line inserted and first chemotherapy session all in one week, I look at where I am now and know that this blasted disease has made me a stronger, determiend person who is assessing what they want from the next few years of their life. 


Watch this space!!!!

Be loud, be clear

This week is all about raising awareness about bowel cancer. Reading other peoples blog posts on this made me wonder how long I have been living with this without knowing. This post is going to look back over the last few years and point out some of what I believe were indicators which I ignored, or put down to other things. Let's go back almost 2 years to when I gave birth to Imogen. Something wasn't right in my nether regions. I can vividly remember going to my 6 week postnatal check and telling the doctor I felt that everytme I opened my bowels it felt like I was passing a hedgehog. That is the best way to describe some of the pain I was in. Sometimes it would take a long time to come and the pain would be quite long lasting. One time on the way to Somerset to visit my family I went to the toilet at Fleet and was still in pain when we left the A303 and joined the A358. For those of you whose geography is not to good, that's about 2 hours of pain. Not excruciating, unbearable pain, but the kind of niggling pain that you are aware of. Going back to the 6 week postnatal check, the GP had a look (not something I enjoy,but something I have experienced a lot over the last 2 years) and diagnosed simple piles. The solution - lactulose. This is supposed to work by softening your stools making them easier to pass. It did, but there was still pain. So I went back to the GP. Saw a different GP this time. I remember him being impressed with Imogen's sucking blister as she was about 10-12 weeks old. He was also impressed I was still breast feeding. But that is a whole other story. He had a look (see not even 6 months in and 2 people have had a look!!). He diagnosed a rectal tear and pescribed a rectal ointment which gave me incredible headaches about 25 minutes after applying, not good when you have a not yet 2 year old and maybe 3 month old baby. The rectal appointment worked, but I had to use it for about 6 weeks so kept on going back for repeat prescriptions. Now I am wondering whether the intermittant bleeding might have been an early warning sign. To be frank here this probe has been around for the last two years and in the end I tarted to just accept that I would get a bit constipated, pass some very painful stools and then things would clear up. Over the remainder of 2010 things settled then flared up and the settled down again. Towards the end of 2010 or the start of 2011 I spoke to my little sister, who was training to be a nurse about that fact that sometimes I would be constipated in the morning, but have unbelievably loose bowels in the evening. At the time she saidnothing. Since then she has said that it did raise some red flags for her, but she was dealing with her own issues at the time. Following our car crash in February, I started too notice a few other health problems. 1. I was loosing weight. Not massive weight dropping off me but enough that some of my clothes were starting to get lose. Several people commented on it. I assumed it was down to the fact that I was walking a lot and eating healthily with 2 toddlers to encourage to eat. 2. I was getting dizy spells. Sometimes when I stood up too quickly which is common if your blood pssure is low. However these were not exclusive events. Sometimes I would almost black out when hanging the washing out, or standingat the hob. Another thing that was not ideal with 2 young children. 3. Stomach and bowel problem were getting worse. Not only was I having constipation and loose stools in the same day at least one every couple of weeks, but the stomach pains that went with them were immense. I would be doubled over Iain. A couple of people have asked how I knew they weren't period pains.lets leave it with as a woman you know. 4. Finally the breathlessness. Pushing a pushchair with two toddlers is hard enough work, but I remember taking the children to Wakehurst and being absolutely exhausted so much so that they fell asleep in the car and whe we got home I fell asleep in the car too. Towards the end of May things came to a head on camp with Anthony's scout troop. I was camping with two toddlers at the tool of a massive hill and had horrendous diarrhoea and vommitting. But still I put off going to the GP. Eventually after another 6 weeks I finally managed to get a child free day and a doctors appointment on the same day. The outstanding diagnosis - low blood pressure and come back for blood tests next week. I never made it to those blood tests, by then I had been admitted to hospital and was causing a lot of medical professionals a headache. So, in hindsight, what would I have done? It seems such a easy thing to say but I would have badgered my GP. I would have gone every month and made a fuss about the pain I was in, the discomfort I was experiencing and I would not have taken no for an answer. If I knew the what I know now about bowel cancer and complications I would have lived at my GP surgery until I got investigations and knew why things were so bad. What do I want you to do? If there is anything worrying you about your bowel habits please go to the GP. Yes it might be cancer, but it moght not and if it is you want it caught it early so you don't go through the uncertainty that it have over the last 6 months.

And so it goes on

We are now nearly a week into round three and I can definitely say that it doesn't get any easier. The worst thing is the sensitivity to cold. Just when you think you are getting used to it, you pick something up or go to hold a child's hand and it is too cold and the tingling is back. But we are keeping things normal too. Hard to believe, but Isaac will be starting school in September so we have been visiting. Tony and I are terrible for only looking at one option!! When we bought our first house we bought the first one we saw, when we were looking for a childminder we saw one (I emailed a few, but we saw Fran and loved her from the off!!) So far we have only been to our 'catchment' school but we both loved it and Isaac and Imogen both enjoyed having a look around and hearing about the different ways that they teach the children and the opportunities they will have. We do have two more that we need to visit but 'he'is in charge of arranging that. I am just shocked that there are not formal open days which the schools promote on their websites, and that there is not more support for parents. All we got was a letter telling us which our 'catchement' school is and to log onto the web site. The was nothing about how to contact the schools or even dates of open days to help you out. But with all the government cuts maybe they are making us work for it. There has been another development this week. On Wednesday I was given an injection to stop me ovulating and hopefully increase my chances of conceiving in the future. This is still a new treatment and there is no telling whether it will work or not, but in for a penny, in for a pound!! This injection has to be given every 4 weeks, the nurses have shown me how to do it myself, but the needle is quite large and it does scare me slightly. I am wondering whether the if nurse will be able to do it for me ;(

Something on Side Effects

I am rapidly coming to the conclusion that the side effects are far worse than anything I have been through so far. 


A new one hit me today - painful soles of feet. I had forgotten that this might happen until it hit me this morning that my feet shouldn't really hurt. 


After a quick trip to Sainsburys to invest in Milk, Bread, Oil and some insoles, which might or might not work. I decided to look at the interweb.


I have found the forum on Beating Bowel Cancer really helpful and was not disappointed this time either. 


It seems that this particular side effect is going to get worse and I might have some days when I am going to struggle to put weight on my feet. This will be .....mildly inconvenient to say the least with 2 active toddlers who need entertaining. 


However I have also found out that reflexology may be helpful with this particular side effect and the local Cancer support centre, The Olive Tree, offers reflexology to cancer patients. So now I have to find time to locate my Olive Tree information pack, find out when they offer relexology, call them, book it & crucially attend the session. But I will, I have already managed to book a Yoga session with them for next Friday & more importantly it allowed me to invest in a new yoga mat, because mine was looking a bit the worse for wear.


So what other side effects have their been?


Well the weirdest one is the sensitivity to cold. That kicks in as soon as I leave the hospital. When I am walking down the corridor some moisture on my lips makes them start to tingle. It gets worse. I can't go in the fridge, freezer, pick up cold clothes, use the wet wipes, take wet clothes out of the washing machine, touch the wet car etc etc etc. I thought that it wouldn't last too long, but I am only on cycle 2 of 8 and there is still a little bit of tingling going on every now and then. 


Then there are the 'conventional' side effects 


- Tiredness normally kicks in about 2-3 days after the treatment and is sheer exhaustion. I need to sit on the sofa and sleep, but 2 toddlers do make that difficult, but I can then go to bed and try and get a full nights sleep.
 - Nausea can be controlled by the multitude of pills I am given and by the 2nd weekend I am normally eating normally, although the quantities are smaller so I am loosing more weight. I know most women would be excited by the prospect of loosing weight, but I have never bothered about my weight. I think with my height I can kind of pull it off and if I am too slim I think I look ill rather than healthy.


There are other side effects too. I think my hair is starting to thin, because I am certainly fishing more out of the shower than I used too. This doesn't really bother me. 


I am also a lot more irritable than I used to be. I am not happy about this. I am snapping at the kids and don't want to do that. Its not their fault. I am hoping that the yoga and maybe a massage well help reduce my stress levels and henceforth reduce my irritability although I also think that a good nights sleep would probably have the same effect!!


I am sure I will have more to say on this subject as my treatment progresses and things get worse, but for now I am done!!

Ding, Ding, Ding, ROUND 2

Wow, if you have a problem complain.


Although today was chemo day it was so much nicer than last time.


It was a long day. Left the house just after 7am, train at 7.25, change at Gatwick, train to Guildford, walk to Bus Station, Bus to hospital (£1.60 what a RIp Off), get lost in hospital due to really erratic signposting.


Let the receptionist know I was here, then wait and wait and wait.


I was called in about 20 minutes late and then I let rip.


I told the consultant all about the fiasco I had suffered the previous time. He looked shocked, he said that he had never heard of this kind of failure in the system and then he arranged for me to talk to one of the chemo nurses to explain what had happened too.


After getting everything off my chest, he checked all my blood results and how I had coped with the previous treatment. He explained that the some of the side effects would be cumulative so they would get progressively worse. Yay what fun, I can hardly wait, and I can already notice it. As I sit here typing my fingers are all tingley and I feel quite nauseous although I can't take the next anti sickness until bed time. 


I then spoke to the chemo nurse and went through it all again. You know the fiasco so I don't need to go through it all again for you here. 


 By now it was 11.30 and I was supposed to go for treatment at 12noon, but I was starving & did not want go have hospital food. The chemo nurse had told me that the treatment would not be delivered until 1pm at the earliest so I had some leeway.


I went to try and find the restaurant. I had a quick look and could not see any card machines. So I checked. What a joke - The hospital restaurant only takes cash. What happens if you have been admitted to A&E and don't have any cash. I was shocked, how in the 21st century can a major hospital restaurant not take plastic.


Then I remembered. When I had come into the hospital earlier I had seen a Costa, surely they would take cards and have sandwiches. Thank You Costa Coffee. They took cards, but not loyalty cards. 


I had a sandwich and coffee and headed back up to the Chilworth Day Unit just after midday and didn't have to wait very long until I was called through and told to find a seat. The nurse came and explained that they would flush the line, change the dressing and then once the treatment was delivered it would take about 2.30 hours to go through and be flushed again. 


So I was hooked up, took out the paper and educated myself about current affairs, taxed my brain with the suduko & crosswords, plugged into my ipod I can honestly say that it wasn't too bad. The Zutons kept playing, although I was on shuffle and I was transported back to 2004 and Glastonbury in the New Bands Tent and the mud and I felt happy. 


About 2.30 Tony & the children arrived. I wasn't sure about this as they might not have been too confident. But I am so glad they came up. The smiles on fellow patients faces were incredible. To know that my children could do that was fab & I hope I cheered up some peoples otherwise rubbish days.


So now I am home and the eyes have stopped twitching, but the tingling is bad. Wearing Gloves however makes operating a mouse, iPod touch and wiping bottoms inconvenient so I have to grin & bear it.

Climbing

I seem to have created monsters rather than children. 


As a type littlest hayllar is copying her brother climbing into the book box (obviously easier to read sitting on the books and surrounded by them). She has just stepped off the side of the box and is now currently sitting on my lap startled.


Not content with that type of climbing she can do stairs (at 10.5 months I ask you), into laundry baskets (empty or full she isn't fussy).


Yesterday, however was the piece de resistance. 


Isaac and Imogen decided that the carpet in the living room was not nearly colourful enough. They emptied 6 shelves of DVD's and spread them all over the carpet. Isaac realised that he could build towers with them and made a series of steps up so that Imogen could help him out and she looked very pleased with herself.


There is a cautionary tale here as well. During lunch I did what I often have to do and loaded the dishwasher, I can see the table when I come back through and I happened to see my daughter had climbed out of her highchair (she had been strapped in) and was helping herself to grapes from Isaacs box.


Climbing children,  the bane of my life. Now off to purchase a new stairgate for the bottom of the steps